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$19,363 raised

$30,000 goal


We are fundraising to find a cure for Batten Disease

As part of the Haley's Heroes fundraising we are working with Circumvent Pharmaceuticals on their next round of research. Every dollar we raise is matched as part of this grant. Circumvent is creating a small molecule that shows promise to slow CLN1 and also Alzheimer's. This research benefits both the CLN1 community and the larger Alzheimer's community.

Batten disease is the common name for neuronal ceroid lipofuscinoses (NCLs), a class of rare, fatal disorders of the nervous system. Typically beginning in childhood, Batten disease systems include loss of vision and language, seizures, changes in personality and behavior, dementia, and a shortened life expectancy.

We are working with some of the best minds in the clinical field to lead research teams and evaluate the effectiveness of gene therapy at preventing, curing, slowing, and reducing symptoms of CLN1.

Ultimately, all victims of Batten Disease will receive or benefit from foundation influenced care and developments to have symptom slowing, symptom termination, symptom reversal, cure and/or prevention. We will see 1. FDA approval for Batten Disease therapy clinical trials, 2. Clinical success for Haley and other children, 3. Scientific advances beyond Batten Disease.